Haven't posted in a long time. things could be better.

Haven't worked in almost a year. not really sure what I'm going to do w/my life since I don't think I'm gonna be able to go back to my old career that I just spent 5yrs training for.  Wonderful right?  Can't pass the damned certification test & can't drive so pretty much means I can't work.

Plus with having Epilepsy (not that I've had that many seizures, but I have no warning as to when one is going to happen) every time I have a seizure my doctor alters the meds. I was doing really well for a while. Thought I'd finally gotten to a point that my life could be back to normal. 9.5 months w/no episodes....and then I have an absence seizure. Lasted less than 30 seconds. Didn't lose consciousness or anything but was out of it enough to not be able to respond or react to anyone/anything around me.
So once again the paperwork to get my driver's license reinstated has been postponed by my doctor again.
I understand his reasoning but hate it all the same. I hate having to rely on others to get around to places the transit system doesn't go.


for a while now Ive thought about just going off my meds entirely and finding a nice quiet out of the way place to disappear. I'm so done with this life. I don't know what it is I'm supposed to be doing but this isn't it. I'm tired of being a burden to others

first of all i was finally able to get on a program to get my depakote which it has been 2 years since i have had to change my medican about i took becasue i had to pay ful price but anyways my doctor put me on clonazepam for my restless leg syndrom but while i was reading it i found out it is also for seizurs has anyone took this medican and does it help with controling your seizurs

"""becky"""

Oddball question here:

Are any of you affected by constant sounds? Audio-sensitive etcetera?

I've been fit-free for a while but have been constantly reviewing to try to find a cause. I'm beginning to think a common theme - that I've not even considered before - could be sounds.

Looking online I can find people talking about "shock epilepsy" - IE they jump at a certain sound and that kicks them off - but I'm looking more at a specific type of continual sound - for example something like the backing sound to this game (http://www.kongregate.com/games/sarahnorthway/rebuild-2). When I play it for more than about 30minutes it leaves me feeling very 'spaced./zoned out' and 'jittery' - one time I have had to use significant concentration to snap me away which was pretty alarming!

Obviously please, please, please don't listen if you think it could affect you specifically!!

question.  do some of you ever have seizures where you lose bladder control but you don't bite your tongue??
I think I had a seizure in my sleep friday night.  All the usual signs - stiff sore, headache and peed... but no tongue biting.??
I usually have nocturnal seizures, but it's been almost three years.

Did I have a seizure? 

Have you seen this?

https://www.seizuretracker.com/

there's an iphone app as well

so a few months ago i submitted a nonfiction piece to a national writing contest and it got accepted; this is a big deal for my college. but i'm feeling guilty because the piece is about having a seizure. i'm the kind of person that tries to ignore my epilepsy as much as possible and when I wrote this it was a last minute sort of thing for my creative writing class. When I was going through my portfolio I was looking for my strangest piece but I picked my seizure piece because I knew it would stand out and it did. I feel like I played my disability card and I feel bad. :-( does anyone understand what I’m talking about? Did I do the wrong thing?

I have been taking 800mg of Tegretol daily for something like 6 years now. Recently, my 200mg taken at 4 different times each day was clumped into 400mg 2X daily, which i love. Everything has been fine. I've been taking these for well over a month now with no problems. Yesterday and today I've been feeling dizzy beyond explanation. I can function, speak, hide the fact that I feel wobbly... but the feeling and distortion in my sight is there. Anyone else have something to share regarding this?

I started having pregnancy symptoms about 5 weeks ago now I think. All tests have come back negative, so there's still no definite answer as to whether I am pregnant, or having a false pregnancy or something else. But I've been feeling a bit odd, like I might be having some nocturnal seizures, but I wasn't sure. Then today at the GP I had a seizure. If I am pregnant I think I'm around 8 - 10 weeks, but either way I'm getting symptoms which seem to have brought seizures back.

I'm on lamotrigine and I saw the neurologist last week who told me they increase the dose in the second trimester, which I wouldn't have reached yet. But they also have never measured my levels, don't do any blood tests for any sort of monitoring and half the time don't seem to know what they're talking about or just don't seem to listen.

I'm pretty sure there were people in this community who have been pregnant whilst on lamotrigine so I thought I'd ask what sort of increases in medication people had and when, if ever? I know every person is different, but I kind of worry about some of the neurologists I see at times. An it concerns me that they talk about reducing medication after pregnancy as if it were the same as coming off medication, not taking into account physical/hormonal changes.

I'm going back to the GP next week, so will see what they say an what the result of blood test is. Until then I'm going to try take it easy an hope I don't have more seizures.

Posted via LiveJournal app for iPad.

so because of my insurance i have to see a new doctor now. they won't cover my old because one she was a across the river and they have to be instate. and i am really worried. i keep think of the worst; med changes and tests. i am afraid that he'll be like "alright lets see what your seizures are like- stop taking your meds" or "i don't like theses drugs, try theses instead." i have gotten myself in a state. i really could use some kind words of encouragement. has anyone have to change doctors like this? i did once because he was a idiot and wont listen to me but i really like my doctor and dont want to leave her. :/ i am not in a good place right now. blah.

Hi everyone.
I know for some of you this may sound like I'm complaining so ahead of time I'm sorry.  I'm still trying to learn about this... illness/issue/diagnosis?
Oh and yes I have been posting here periodically so I'm sorry for that too if I'm repeating or overreacting to what may be some small issue.

In the past 2 years I've now had 2 car accidents and about a dozen Grand Mal seizures that I know of (I think 4 of them were within a 24 hr period)  I'm getting pretty scared.  I, as far as I can tell, have no noticeable warning signs prior to one occurring.  Also, as far as I can tell, for 4 of the seizures I have had that I remember feeling a split second sensation, no 2 have been similar.  Neither of the car accidents were similar either.  I know nothing of the first one, and only bits and pieces of the second one which just happened on 6/21.  Plus how is it possible to carry on a conversation with a few people for more than an hour yet not know of or be aware of any of it?  The entire day of the accident is a complete blur to me.  The only information I have is from what I've been told and the bits I do remember.

No one in my family has Epilepsy or know anything about it.  Plus as a kid I was tested and told I had ADD.  The more I look at the similarities between that and Petite Mals, I begin to wonder if maybe I was misdiagnosed?   (Not that I'm trying to act like a doctor or anything here, its just that I don't fit most of the descriptions of kids with ADD.  The reason I was tested at all was because my parents were told I was always *daydreaming* in class.

any ways, not to spill my whole life out here at all.  I'm just needing a place to find some answers/information/direction to go.  There must be some reason this thing hasn't killed me yet.

Oh and don't know if I'm on the right meds?  Maybe it's not the right combo or dose or something.  its Lamotrigen and Topamax.  Plus not sure i'm still liking the Neurologist either

ok about 2 weeks ago friday i had a grand maul seizure, and for some reson today at work i thought i seen the lid to some gravy off so i went and grabed it real fast to make sure it did not spill well come to find out the lid was on tight, and then tonight taking my dog back home from his walk i thought that a great big black dog was running after us and i turned around real fast to come to find out there was nothing there, but what i need to find out is if there is anyone else who has had these Hallucination after having a bad seizure, which this was my first one in over 10 years. all i know is it scared the crap out of me when i thought i saw a big dog running at us

This week has gone completely and utterly to hell.  My life is one big giant mess and I'm not sure what's going to happen any more.  Plus, I think my career might be over too.

well yesterday my wife and i was at the store on our way home and i had to tell her to hold on because i keep seeing flashes of lights in my eyes and i could tell something was wrong well i told her to just take me to the hospital and as soon as i got there not even 5 minutes of being there i went into a grandmal seizure which was my first one in over 13 years of not having them and it sucks i am so sore today and drained i am not sure what had triggered this i know i have been working a lot and i have been having problems with my asthma so i am not sure if that would cause it but i hope they don't start back up again any more i do have enought medican now for at lest 3 moths after that i am not sure how i will get my meds again

I have petite and complex partial seizures and unable to drive.

I've been in three long-distance relationships back-to-back. That's what I get from online dating. It bugs me because in all cases She'd have to be the one to come visit me since I'm not able to drive to her place. They ended because I was "needy" when it came to the transportation issue. One was my ex-wife. I didn't realize how much she resented me until she got drunk one night and told me :( The other one was cheating on me. Third time's the charm?

Since we can't see each other as often as we'd like, I came up with a few ideas for making things less stressful. We want to make this work. I do not want transportation to be a reason for breaking up.

IM/texting: That's a no brainer.

exchanging daily pics, textfilly of course

texting pictures of flowers and stuff LOL, It's interesting

Skype is great for face-to-face contact.

When she does visit, I offer to help pay for gas

If you have any suggestions or want to share your experiences then please reply.

 So, I have a question/request that may strike some as a bit personal, so if anyone wants to give feedback but not necessarily for the world at large to view, feel free to PM me.

Graduating from college in a few days and I'm looking at a year of nothing but grad school applications and unemployment ahead.  In an attempt to mitigate the associated depression and keep me productive, a well-meaning friend purchased a Writer's Market book for me.  He never liked that I stopped writing and thinks that I'm happier when creative, so I'm attempting to indulge him and put together some ideas for a new fictional piece.

At this point, the only thing about it that I know for sure is that the main character will have epilepsy.  The dearth of epileptic characters not written by Dostoevsky has always irked me, so this is my attempt to rectify that.  Of course, my experiences with epilepsy have been largely mediated through my own life -- I'm high-functioning, if on pills and a non-driver for the foreseeable future, and I have a combination of tonic-clonics and complex partials -- but my biggest fear is making broad generalizations of what "life with the condition" is like based only on what I know personally.  So, in the interests of not misrepresenting things, I wanted to know if there was anything about being epileptic or the condition itself that you wish more people knew/was more often depicted/is crucial for a "healthy" person looking in to understand.  Anything from anecdotes to straightforward suggestions to a more blunt "you're over-thinking this" would be greatly appreciated.

The Gods' blessed thing works!  On April 28th the neurosurgeon implanted my very own vagal nerve stimulator (VNS).  This past Friday, it was turned on.  This morning, I felt the familiar oncomings of a morning neck-twitcher.  In cases like these, I was told to use the very strong (50 Gauss) magnet that comes with VNS.  I hold the magnet over the device for 60 seconds, pull away, and zap!  The juice goes from 0.25 amps to 0.50 amps; enough to quell the oncoming seizure.

You cannot imagine how relieved and overjoyed I am!

There, I've 'said' it.  (Posted it, really, but the point is the same.)  I've decided that enough is enough, already, and even it I only experience a 50% reduction in seizure activity, the surgery will be worth it.

Thursday I spoke with a representative of Cyberonics™–the company that makes the VNS device–and we spoke at great length about the pros & cons.  I asked him many, many questions, and I'm happy to say he was able to answer nearly all of them to my satisfaction.  Those he could not, he admitted as much, but either promised he's get back to me or pointed me in the direction whither I might find answers.

So this coming Friday, I'm off to visit another doctor, one whose job it will be to determine if indeed I'm a good candidate for the surgery.  Frankly, with all the crap I've been forced to go through all my life, I sure as hell hope I am.  Personally, I really can't see why not.

*fingers crossed*

I got referred to a new doc to try and figure out why I continue to seize. So, next month I'm seeing a psychologist through the Strong Epilepsy Center. I'm not happy that I got referred to a psych professional, but I guess it's better than nothing. I still think there's a large medical component (if not the entire reason) to why I seize. Since I already see a psychologist for psychotherapy related to actual psych issues (and I'm not ditching her), I'm not sure how this will even work. I talked to this guy on the phone and he said I can come for a consultation and we'll go from there.

All the doctors seems to think this is purely a psychiatric thing; that my seizures are stress and anxiety induced. If that's the case, can somebody enlighten me as to why I DIDN'T have a seizure a couple weeks ago after watching someone get jumped on the bus I was on (on the way to a psych appointment of all places)? After the driver pulled over to call the cops when punches were being thrown, I bolted from the bus and walked the rest of the way to the clinic. I was in tears, hyperventilating, and about a step away from a panic attack. If the psych theory was true, I should've been convulsing in the middle of Main Street and not even made it to Unity. Thanks to a lovely thing called PTSD, I can't even watch an assault. Just hearing people argue loudly freaks me out and I have to get out.

I'm trying really hard to go into this with an open mind. On the other hand, I can't take many more people telling me that this is because I'm crazier than I thought (and I think I'm way out there). I don't actually know if the doc is a straight psych psychologist or a neuropsychologist since he sees patients mostly in behavioral health (and at the Epilepsy Center once a week).

I know I have psych problems. I have a bunch of diagnoses (which I think the list needs to be revised, but that's neither here nor there). I know I'm a wackjob; they don't put normal people in locked psych units 11 times in a 2 1/2 year span. I also know that when you carry even a single psych label, doctors look at you differently. Since I have a few, I know I'm basically screwed from the moment I walk in.

I have theories, but they don't care. I think there's a cardiac component. The 24-hour Holter wasn't absent of findings. I think I may become more sound sensative before I seize, but I haven't paid close enough attention to see if that's consistent, so I'm still working on that part. I keep repeating over and over what I feel every time I'm about to seize. I've also explained that these are different from medication-induced seizures I've had. I'm going to spell it out here again:

Medication-induced:
- Generally no warning.
- A couple days of awareness lost, to the point that I wake up not knowing where I am, what happened, or what day it is (I guess and am always wrong).
- According to my dad, I was practically psychotic after a Zyprexa-induced seizure (my fault; I overdosed on it) and had to be forcibly restrained.

Whatever is going on now:
- Same warning every time (heart rate spikes up and nothing I do calms it down, shakiness, stomach feels funny).
- No awareness lost. I know where I am, what happened, and what day it is when I wake up. I also feel embarassed and more often than not cry because I'm so embarassed.
- After the seizure I'm tired and physically drained for the rest of the day. Usually comes with a headache, too.

I took a different approach this year to convince doctors and myself that I'm not working myself up into a seizure (the self-fulfilling prophecy thing). So, I've not been making efforts to make myself safe (stop what I'm doing, lie down, that sort of thing). That led to my faceplanting off of an elevator at the Eastman Community Music School (right before my clarinet lesson, which I didn't make it to since I felt like crap fterward), and bashing into my bedroom wall that I had rolled into and was bouncing off of (who knows how much more I would've been hurt had my boyfriend not been there to pull me away from the wall). I mentioned this to my PCP last time I saw her and didn't get much reaction.

( Personal life type stuff... )

The maker of health products ranging from Band-Aids to knee implants is recalling two lots of Topamax, a medicine prescribed for epilepsy and migraines. By the company's count, about 57,000 bottles of 100 milligram tablets are affected.
http://www.npr.org/blogs/health/2011/04/14/135406773/latest-smelly-johnson-johnson-recall-topamax

I've had enough of this.  I'm losing the ability to concentrate.  I'm losing my temper at times.  Worst of all, I'm losing my memory.  My mom has remarked on more than one occasion that my symptoms resemble those of a stroke patient.  I can't continue to live like this, or I'll become what I fear most...someone who may as well have Alzheimer's.

So I'm nearly 100% decided; I'm going for the Vagal Nerve Stimulator (VNS).  I have an appointment this Thursday morning with a guy who can give me more detailed info on the procedure, side effects, costs, etc., so I can make a more informed choice.  Really I just want to know what to expect.

So is there anyone out there who already has a VNS implanted or knows someone who does?  I'd like to hear you're experiences.

Random seizures, lots of em, out of nowhere!  This hasn't happened to me in forever!
So my condition's been fairly stable over the last few years despite several breakthrough seizures.  The last 9 months or so I have been getting more and more partials, more and more grandmals which seemed like out of nowhere.  The last couple of weeks I had a whole bunch!  Like a lot!  Like holy crap are you kidding?!  I was a hot mess for sure.  I have been on all sorts of medications: depakote, trileptal, tegretol, lamictal, and I think a couple more.  I didn't like any of them though lamictal is alright, it doesn't bother me a whole lot.

New Drug??? And a good drug resource!
When I went to my neuro recently he decided to keep me on lamictal and put me on VIMPAT as an adjuntive therapy or an add-on.  This is a fairly new drug, I haven't heard anyone talk about it.  I guess it's for partials??? I dunno, I read about it in Davis's Drug Book (www.drugguide.com) which nurses use... it's a wicked good resource. 

Since I've been on the VIMPAT for the last few days I've been getting better-ish.  Fewer partials, fewer (if any) grand mals, really I've only had auras that I know of.  I'll get auras and then nothing.  It can take a month or so to see a difference but I'm trying to stay optimistic.  I'm not so sure about the side effects though since many of the side effects reflect symptoms of an aura or a seizure. Have any of you heard of VIMPAT or have been on it?

Fear, Frustration, Venting
How scary it is to have no idea when the next one will happen, how to keep safe, and how to spend time alone (while maintaining safety).  I've been afraid to be alone, to use stairs, to use a stove, and those sorts of things.  It's difficult to learn how to cope, how to help others cope with my condition, and to figure out what my abilities actually are.  Considering what it's like to be postictal or the other things that happen after a grandmal (like stiff, sore muscles and what I like to call "having the dumb" which by no means is a dig, just kinda... not all there) I feel like I'm missing out a lot. I dislike having to cancel plans, to not be able to make them, and to randomly have gone MIA from the rest of the world. I hate feeling these things because, like you, I want to be self-sufficient and be independent - I don't want to need help showering and putting clothes on and tying my shoes and I want to be able to help do things like carry groceries or even to just make a bed.  I get all excited when I've regained my abilities to stretch, to walk and to do things like reach for stuff across the room.  But hey little successes are still successes... and sometimes little actually isn't so little...

Accepting Help
I've been learning how to accept help from loved ones.  Not taking my frustration out on people who are helping me to help myself is definitely a good thing.  When I am able to be around some people who do not judge me for my condition it makes it easier for me and much less stressful.  I am humbled by it and sometimes embarrassed but so far so good...

So, I know I've already asked for help a bit on this before, but now...

In the past week or so I've had some rather odd, uncomfortable, and not quite easily describable sensory issues.  I know before this week one or two things were going on that caused me to ask about auras.  I have tried to just sort of ignore/get past/explain away those little bits as nothing more than a little added stress in my life.  This past week, it seems those small bits have been more persistent and one or two other things have come up as well.
I know I could/should maybe talk to my neurologist, but last month when I called him, he seemed kind of like I was over reacting.  (I had called him about something somewhat unrelated to this all this at the time)
I think, 2 years ago before all the stuff with the seizures started, I wouldn't have given any of this a moment's notice. (granted maybe I wouldn't be experiencing any of this either?)  Now, especially in the past 2 days, I've been nervous that I might be on the edge of having another seizure.  I don't have any warning signs or know of any triggers since I've had less than a dozen Grand Mals that I know of.  I don't want to be constantly wondering when the next one is going to happen either.  All I know is that I haven't been feeling *right* or *normal* in the past 2 days.  I have a love/hate relationship with my meds and really don't want to have to go through another adjustment period if the dosages get changed.  Nor do I want to have to give up driving for a bit of time since that means not working either.
I just wish none of this had happened at all.  It's all gotten so complicated and it's caused so much destruction in my life in such a short time.

so I guess this is a 2 part post.

First, I've been sort of wondering if there is anyone who gets an *aura* before a seizure that might be willing/able to describe what it looks like?  I know that might seem kinda stupid to ask and all but I guess I'm trying to maybe get a better idea of what I might actually have seen before my last seizure happened?  Plus there's been a few extra little things that have kinda just....

any ways...

Second, this is kind of a caution/warning:
If you plan to see Cirque Du Soleil's show Quidam, there are several quick bursts of strobes at various times throughout the show.  Sort of a lightning & thunder affect in the show.  It's a pretty good show, but I wasn't prepared for the strobes, especially sitting right about eye level with them.  (gotta love stadium seating)

Up until my first seizure (caused a car accident) I hadn't ever had any bad problems or major sensitivity to strobes, only once in a while would I get a headache if I was around one for like an entire night.  Since starting on seizure meds, I've been having a lot more problems.  I've had one seizure triggered by a strobe like affect from a tv in a dark room.  Has any one else experienced this?

Epilepsy is not a disease! My name is Yana. I have epilepsy most of my life. I was diagnosed with epilepsy when I was almost 2 years old. My epilepsy was controlled for 17 years but then reappeared with a vengeance.Since 19 years old I have been fighting to keep my epilepsy under control. As of today it is not under control yet. Three meds that I take do not help me yet but I will not give up. Hopefuly I will find a solution. I am originally St.Petersburg, Russia. I grew up in that beautiful city. I moved to a couple of places before settling here in San Antonio.

 

Well last time I had post in here I was taking depoke. 3 times a day and. That was 5 years ago and. Now I am. Seizue free I only have to take my medican when I start to have seizures which it has been 3 years since I had one and I have not taken my meds in 4 months.

So. I've got epilepsy. I'm 24 now. I started having seizures at 17, only the fun grand mal tonic clonic seizures. Keel over, bite your tongue, pee your pants, the whole nine yards. No dice ever controlling them, either. Usually it's just one or two a month around period time, but every once in a while you get a fun experience like two weeks ago, where I was no where near my period, and instead of one or two seizures, I had seven. I took an air conditioning unit to the face, and ended up with a super black eye and stitched up and bruised all over. Super fun times.

Anyway. Over the past seven years, I've been on Lamictal, Dilantin, Topamax, Tegretol, Depakote, Keppra, and Zonegran. Again. None have worked. Right now, I'm trying out the cocktail of Lamictal (600MG), Dilantin (400MG), and Zonegran (400MG).

Alright. As you can imagine, the side effects aren't much fun. Like, at all. I'm taking a crap ton of cranberry pills for the number it's doing to my kidneys, a bunch of b12 to try and help with these moods, and Phenergan for the nausea. I'm still struggling with the side effects. My moods are still a mess, the headaches are extraordinary, my sleep is so jacked, I can't even tell you (wild dreams, mixed with sleep walking mixed with insomnia), and I get so rubber headed sometimes, I just don't know what to do with myself.

What do I do? You guys, I'm not sickly. I have seizures, yeah, but I work really hard at not letting them screw with my quality of life. It took me a long time to really get good about taking my medication the way I should, because I have this innate dislike of drugs. Now, I'm on so many, and each new thing that crosses my path that I can't deal with, every answer that is given to me is "add this other pill to your regime." I've got a monster sized pill box, but they can't fit all these damn pills anymore.

At what point do you cross over from your personality to a cumulation of the side effects of your medicines?

I'm re-reading my post, and I sound so whiny. I'm so sorry you guys... I just need some help. What can I do? Is there any way to battle these side effects without doping myself up more? What can I do? I'm so frustrated, I want to scream.

Thank you so much for any help you can afford me.

For all the ladies who use topomax, are of child bearing age, and want to or are trying to get pregnant:

http://smartabouthealth.net/diseases/2011/03/06/migraine-epilepsy-drug-topamax-linked-to-birth-defects/

Just thought you oughta know. I've had personal experience with a doctor who apparently didn't care that I was a developing female and felt it alright to give me depakote which I recently discovered may have caused my PCOS. Know your drugs ladies, because male doctors don't always care.

I have sort of a "poll the audience" question to ask that probably doesn't have a definite answer, but I figured either way I'd be more likely to find some commiseration here.

I've been formally diagnosed with epilepsy for seven years and having a combination of grand mals and complex partials for the same amount of time.  But the panic, tears, and conflicting desires to either hide or have someone take care of me still occur every damn time I'm about to have a seizure.  Does this ever go away?  Or at the very least turn into resignation as opposed to crying and hyperventilating?  I guess I'd hoped that I'd become desensitized after awhile.  I'm a very private person -- the sort who waits until she's alone before crying and overcompensates for a bad temper by only indulging it when pushed too far -- so the emotional fireworks accompanying my seizures are almost as upsetting as the seizures themselves.  It makes auras excessively unpleasant, almost to the point where I wish I had no warning at all because I always fall apart knowing what's about to happen.

I don't know.  I guess what I'm really asking is does it ever get less scary?

Hi everyone...
I'm wondering about the side effects of Dilantin vs Tegretol.  Have you even been on Tegretol?  If it worked what were the side effects you experienced?  I'm currently on dilantin.  It works but the side effects are horrendous.  I'm always exhausted, my gums are huge and my body is covered in hair :(  I don't want to take Keppra because I heard it makes you irritable and I don't want that.  My doctor told me to consider tegretol. 

What are you thoughts on tegretol.  Ive been on several medications before now and I know you take the good with the bad so be honest about tegretol.

I was taking a nap yesterday and I felt a little off DJ was laying with me and I had a seizure. He rolled me over, I laid there for a few minutes, he said I had a total of 5 back to back. My DJ said there was only enough time in between for me to catch my breath for a few seconds and I'd go into another seizure. Have slept the rest of the day and I am still so wiped out. I really hate this.